Gene therapy allows 11-year-old boy to hear for the first time

The genetic treatment targeted a particular type of congenital deafness and will soon be tried in younger children.

Aissam Dam, an 11-year-old boy, grew up in a world of deep silence. He was born deaf and never heard anything. While living in a poor community in Morocco, he expressed himself with a sign language he invented and had no schooling.

L' Last year, after moving to Spain, his family took him to a hearing specialist, who made a surprising suggestion: Aissam might be eligible for a clinical trial using gene therapy.

On October 4, Aissam was treated at Children's Hospital. of Philadelphia, becoming the first person to benefit from gene therapy in the United States for congenital deafness. The goal was to allow him to hear, but researchers didn't know if the treatment would work or, if it did, how well he would hear.

The treatment was a success, introducing a child who knew nothing about sounds to a new world.

“There is no sound I don't like said Aissam, with the help of interpreters, in an interview last week. “They are all good.”

While hundreds of millions of people around the world live with hearing loss defined as disabling, Aissam is one of those whose deafness is congenital. . This is an extremely rare form, caused by a mutation in a single gene, otoferlin. Otoferlin deafness affects approximately 200,000 people worldwide.

The goal of gene therapy is to replace the mutated otoferlin gene in the ears patients by a functional gene.

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